Hi, we are parents to a special needs child. Her name is Danielle Seah. Please spare us a min to share Danielle’s story.
Danielle was born full-term, healthy just like any other child. However, when she turned 6months old, she was diagnosed with Spinal Muscular Atrophy Type 1 (SMA). SMA is a disorder where the individual has a missing gene SMN1 (Survival Motor Neuron 1). As a result of SMA, Danielle has severe muscle weakness and is bed ridden. Danielle cannot turn to her sides on her own, neither can she lift or move her head, nor move her limps. She also cannot sit or walk. She has severe respiratory issues and cannot eat orally.
At 10 months old, she breathes with the help of a breathing machine, a BIPAP 24hrs daily with oxygen support. Danielle has swallowing problems, so she feeds through a feeding tube with the help of a milk pump machine.
Danielle has the IQ of a normal child, and her past time is playing computer games, watching cartoons and pre-school educational videos. Her favourite shows are Nursery Rhythm Songs, Pocoyo, Elmo, Bunny Town and Special Agent OSO. Through speech therapy and special education, she is learning well intellectually with the ability to communicate her wants.
Even though life is tough for her, Danielle is a feisty fighter and went against the doctor’s prognosis of not living beyond 1 year old. She stills hang on and is determine to stay alive. For the past years, Danielle has been in & out of ICU and went through multiple surgeries. Today, Danielle is 6 years old, she has a tracheotomy and is resting well at home.
Danielle’s life transformed ours, and we aspire to give her a quality life, and provides for the machines, therapies, medicine, regular medical procedures that require hospitalization. We have a blog about Danielle, where we share our journey with this precious life, http://myprincessdanielle.blogspot.com/
Danielle’s living needs is about $2,900 a month and the Society is helping to raise funds to assist the medical expenses. You can also pledge to support Danielle by contributing directly to her CDA (Child Development Account #).
CDA name: Danielle Seah Xin ping
CDA no: 589-459197-001
Bank code: 7339
Branch code: 589
Thank you for reading her story and extending a hand 🙂
Living with hope in God, with Danielle,
Frederick and Rebekah